Ponty Bone Support Fund

Photo: A recent photo of Ponty with his three daughters, from left, Leah, and (twins) Samara and Rachel. This is a big smile for PB these days! 

INTRODUCTION 

Calling all friends of Ponty Bone! Many of you have probably found yourself wondering over the last few years, "what happened to Ponty? where did he go?". We started this page to answer these questions and reconnect our dad with his vast network of supporters and fans all over this big, beautiful world. 

Anyone that's met Ponty counts him as a friend. Anyone that's seen or heard him play his music is a fan for life. Celebrated accordion player, songwriter and band leader; Texas hippie, poet, sometimes-philosopher; admirer of all the beauty in the world and most importantly, an amazing friend and wonderful father, Ponty has lived a rich life full of incredible moments and experiences. 

DIAGNOSIS 

Unfortunately, Ponty's ability to experience and appreciate all of the magic and beauty of ordinary, everyday life has been cut short by health issues in the last several years. Many of those reading may know that in the spring of 2015, Ponty underwent (successful) open heart surgery for aortic valve replacement. What you probably don't know however is that for a while before that surgery, Ponty had been... "drifting away"... meaning, he had started to seem more distant and harder to connect with to those around him and especially, to those who know him best. After a too-long period of denial and guessing at possible reasons why, finally, in the fall of 2016 we took dad to see a neurologist, where he was quickly and accurately diagnosed with a rare and utterly debilitating neurodegenerative disease called Progressive Supranuclear Palsy, or PSP for short. None of us had ever heard of PSP, but the characteristics of this disease were an instant "a-ha" for dad's doctor and, upon diagnosis, for all of us.

PSP is a particularly cruel mental disease to be (randomly) saddled with. Now I'm by no means out to say "he's got it worse than anyone else". No one can undermine someone else's struggles or pretend to understand someone else's grief and agony over seeing a loved one suffer. That said, you should understand that PSP essentially robs its victims of the most fundamentally precious and basic rights and capabilities as a human being, while keeping the victim fully aware and conscious of this crime. To borrow from curepsp.org which has been a fantastic site and resource for us: 

"PSP and sister disease CBD are degenerative brain diseases that have no known cause, treatment or cure. It causes complete disability by progressively impairing all movement, balance, vision, speech and swallowing while allowing all cognitive facilities to remain intact; you are literally a prisoner in your own body. It is always fatal. Related diseases are Alzheimer’s, Parkinson’s and ALS (Lou Gehrig’s disease) that attack different parts of the brain causing various manifestations."

In short, the vivacious, witty, charming, incredible Ponty we've known all these years has been stripped of his ability to show emotion or to communicate with his friends and loved ones. An expressionless face now sits where one so full of life and stories and friendships once did. Before his diagnosis, some of those closest to Ponty felt that he was pulling away or not investing as much in his relationships with us anymore when in reality, he was being attacked by a terrible brain disease right in front of our eyes. It's a heartbreaking realization and one that for me, makes you feel guilty and ashamed for suspecting any kind of intentional change in Ponty's behavior towards you. 

Today, Ponty is relatively stable but struggling with ongoing health issues. His disease is progressive by nature so even though there are brief periods of calm, things are only getting worse over time and they will inevitably continue down that path. He longs to maintain connections to the life he once lived and people in it but he is unable to reciprocate with those willing to go out of their way to check in on him (whom we are so grateful to). He's teaching us the selflessness of what it means to truly love. You don't do it because of what you hope or plan to get out of it for yourself. You do it for the person you love in the hopes that they'll be made happier or more whole for it. At this stage our goal is to make dad's remaining time with us as comfortable and happy as we possibly can. 

HOW YOU CAN HELP

This is the part where I ask you, his friends and supporters, to join us in acclompishing that goal. Here are some ways to help Ponty:

DONATE: We're also reaching out to musician relief organizations but if you can spare a few dollars to help out with Ponty's ongoing medical and living expenses, it would be so appreciated. Please note that any funds unused for PB's care will be donated to CurePSP to help fund research for treatment and a cure.

WORDS OF SUPPORT: Knowing PB, what he would appreciate even more is to see the support and encouragement from you all through notes here on this page, emails to him, letters or photos in the mail, or even better, visits, if you're here in Central Texas. Again, even though he won't be able to fully reciprocate, rest assured that the way our dad lights up, in his own way, when he sees old friends or receives an email from an old fan, is something that speaks far louder than words ever could. If you need help reaching Ponty via email, mail or in person, please contact us. 

Thank you for reading and stopping by. If you have any questions or want to contact us directly please feel free. This page was written (with Ponty's permission and review, of course) by Ponty's youngest daughter , Leah. 

With love, 
Leah, Rachel, Samara, and all of Ponty's family